Transcript www.eoutcome.org

Virginia’s Newest Opportunity:
Improve Quality of Life & Support
More People Through the Settlement
James W. Conroy, Ph.D.
The Center for Outcome Analysis
www.eoutcome.org
Today’s Outline
 1. History & Trends - Deinstitutionalization
 2. Personal Journey
 3. The Science:
– How do we know people are better off?
 4. Economy of Scale Concepts
 5. Virginia’s great opportunity
– Better lives for 1000s of people
– Better results for each public dollar
– Need: Independent, Individualized, Annual, Quality
of Life Tracking System
– To keep the system honest and convince any skeptics
Very Big – Versus Small
“Institution versus Community”
 This is a settled issue –
Pennhurst Study et seq.
 Media, scandals, courts,
Olmstead decision
 Institutions have
declined
 Community options are
preferred in every way
Source of The Institutional Model
 Brought to the U.S. in 1848
 By Samuel Gridley Howe
 From a “model program” in




Germany
The vision was a selfsufficient agrarian
community
Free from pressures of
normal life
Protected, safe, healthy
Massachusetts School for
Idiotic Children (Fernald)
By 1866, Howe Said This:
 “… all such institutions are unnatural,
undesirable, and very liable to abuse.
 We should have as few of them as is
possible, and those few should be kept as
small as possible.”
 Such persons [with disabilities] ... should
be kept diffused among sound and
normal persons.
Regimentation 1915
And This (In 1866!):
 “… all such institutions are unnatural,
undesirable, and very liable to abuse.
 We should have as few of them as is
possible, and those few should be kept as
small as possible.”
 Such persons [with disabilities] ... should
be kept diffused among sound and
normal persons.
And Finally (in 1866!):
 I would take heed, however, against
multiplying them unnecessarily.
 I would keep them as small as I could.
 I would take the most stringent
measurements for guarding against those
undesirable effect
 and for dispensing with as many of them
as may be possible.
Skewed Values in America
 1969: The average cost
per person at Pennhurst
was $5.90 per day
 The average cost of
keeping a leopard at the
Philadelphia zoo was
$7.15 per day
 Was this the Economy of
Scale thinking at work?
Institutional Decline, Community Rise
400
350
300
250
200
150
100
50
Institution
Community
09
06
03
00
97
94
91
88
85
82
79
76
73
70
67
64
61
58
55
52
0
Number of Facilities: Public Institutions for People with
Intellectual & Developmental Disabilities, 1850-2010
300
200
150
100
50
20
10
20
00
19
90
19
80
19
70
19
60
19
50
19
40
19
30
19
20
19
10
19
00
18
90
18
80
18
70
18
60
0
18
50
# of Institutions
250
Movement from Institution to
Community
From large, segregated,
historically state of the
art settings
To small, integrated,
more recent models of
what a “home” means
For 100+ Years, What Did America
Do With People Like Mike?
 Diagnose him
 Exclude him from school
 Tell his parents that he
needed medical care
 That he could never learn
and would bring no joy to
the family
 That he needed to live in a
large facility
Why Did Parents Do This?
Because professionals
told them to
Primarily doctors
Doctors had authority
Knew “what’s best”
With the best
intentions
Acceptance of the Institutional
Model
 First publicly funded
facilities -- 1848 Fernald Center,
Massachusetts
 1849 Dorothea Dix
Center, North Carolina
 1849 California Prison
Ship, San Francisco Bay
– 30 inmates – Stockton
1851
We Did Not Stop There
We adopted and spread the “eugenics
scare” period of human history
1880-1920
America decided “These people are
inferior”
They cannot be permitted to breed
They should be isolated from society for
that and other reasons
America’s Sad History in the
Disability Field
 America’s great judge, Oliver Wendell
Holmes, was the source of many of these
ideas
 As we all know, the writings of Holmes
were later used extensively by the Nazis
 At this time in U.S. history, the facilities
were named things like “Pennhurst Home
for the Segregation of the Feeble Minded
and Epileptic”
Figure 1
Deinstitutionalization in the United States:
Mental Retardation vs. Mental Illness, 1950-2009
600
500
300
200
100
Year
MR
MI
90
19
80
19
70
19
60
19
50
0
19
1000s of People
400
“This Is Where I Came In”
 A personal note
 1970, just out of University
 No idea what to do with a degree in
Physiological Psychology
 Got a strange job by pure chance
 Working on a national survey of people
with “developmental disabilities”
 Right at the national peak of institutions
The Pennhurst Longitudinal Study
 Began in 1979
 Largest such study ever done
 Tracked 1,154 people
 Visited every person every year
 Surveyed every family every year
 Measured qualities of life and satisfaction
and costs
 (This process still continues in 2007)
Purposes of Pennhurst
Longitudinal Study
 Track 1,154 people
 Are these people better off?
 In what way(s)?
 How much?
 At what cost?
 What problems and deficiencies can be
detected and addressed?
Aspects of Quality of Life
 power to make one’s own life








choices (self determination)
skill development
emotional adjustment
challenging behavior
attitudes and experience of
caregivers
health
use of medications
earnings
hours per week of productive
activity
 relationships
 family contacts
 financial interest in the home
 satisfaction
 individual wishes, and




ambitions
home environment
family/next friend opinions and
satisfaction
integration
individual planning process
What Kind of People?
 Average age 39 years
 4% deaf
at the beginning of the
study
 Had lived at Pennhurst
an average of 24 years
 64% male
 33% had seizures
 13% blind
 18% unable to walk
 50% nonverbal
 47% less than fully
toilet trained
 40% reported to be
violent at times
 86% “severe or
profound”
Pennhurst Class Members:
Adaptive Behavior Development
80
70.8
70
71.7
72.9
75.2
60 59.7
50
40
30
20
10
0
1978
1983
1984
1985
1986
Pennhurst Class Members: Improved
Self-Control of Challenging Behavior
20.00
CB Average Score
18.04
18.27
18.47
18.67
18.80
83
84
85
86
15.00
10.00
5.00
0.00
78
79
80
81
82
Pennhurst: Strong Initial Family
Resistance to Community Idea
Strongly Agree
9%
Agree
5%
Unsure
14%
Disagree
9%
Strongly Disagree
63%
0%
10%
20%
30%
40%
50%
60%
70%
Pennhurst: 1991 Community
Family Satisfaction
Very Satisfied
272
Somewhat Satisfied
104
Neutral
18
Somewhat Dissatisfied
20
Dissatisfied
6
0
50
100
150
# of Families
200
250
300
Different Question: Has Your Relative’s
General Happiness Changed Since Moving?”
Much Happier
43
32
Happier
Same
25
Less Happy
0
Much Less Happy
0
0
5
10
15
20
25
30
Number of Families
35
40
45
50
What Kind of People Made the
Largest Proportional Gains?
Connecticut Movers, 1985-1991:
Percentage Gain in Adaptive Behavior
30
28.4
Percent Gain from Baseline
25
20
15
9.5
10
5.3
5
1.3
0
Profound
Severe
Moderate
Mild
Pennhurst Mortality
250
Cumulative Deaths
200
150
Pennhurst Model
Nat'l DC Model
Actual
100
50
0
1978 1979 1980 1981 1982 1983 1984 1985 1986 1987 1988 1989
Year
Pennhurst Costs Study, 1982
Pennhurst Longitudinal Study:
Who Pays?
$50,000
$1,000
$45,000
$1,000
$40,000
$21,000
$35,000
$30,000
$25,000
$36,000
$20,000
$15,000
$25,000
$10,000
$5,000
$3,000
$0
Institution
Community
Local
State
Federal
Did the Pennhurst Results Meet
the Scientific Test of Replication?
 Yes, 1356 people in Connecticut
 Yes, 1000 people in Oklahoma
 Yes, 400 people in New Hampshire
 Yes, 1100 people in North Carolina
 Yes, 200 people in Kansas
 Yes, 400 people in Illinois
 Yes, 2400 people in California
Now We Have Followed More
Than 7,000 People
 As they moved out of
institutions
 Into regular homes in
communities
 Other researchers have
gotten the same results
 Australia, Canada,
England, New
Zealand, France,
Sweden, etc.
Movement from Institution to
Community
From large, segregated,
historically state of the
art settings
To small, integrated,
more recent models of
what a “home” means
Questions?
 What is the status of state institutions in
your state and the prognosis for the future?
 Poll: How many states are now free of state
institutions for people with intellectual &
developmental disabilities?
 Poll: In what year will the last public
institution close?
Economics
 The notion of “Economy of Scale”
 Would seem to imply that larger settings would
cost less per person
 But how do we explain $$$ of institutions?
– The epitome of “assembly line” thinking
– Actually cost the MOST
– The most costly human service EVER > $200,000
 Is there such a thing as “Diseconomy of Scale?”
 Yes
Economy of Scale 1:
Larger Organization, Lower Cost Per Unit
$120
Cost Per Unit
$100
$80
$60
$40
$20
$0
1000 2000
3000 4000 5000
6000 7000
8000 9000 10000 11000 12000
Number of Units Made
Economy of Scale 2:
Diminishing Returns
$120
Cost Per Unit
$100
$80
$60
$40
$20
$0
1000 2000
3000 4000
5000 6000
7000 8000
Number of Units Made
9000 10000 11000 12000
Economy of Scale 3:
Diseconomy of Scale
$120
Cost Per Unit
$100
$80
$60
$40
$20
$0
1000 2000 3000 4000 5000 6000 7000 8000 9000 10000 11000 12000
Number of Units Made
Economy of Scale
 Large institutions are the highest cost
– National average now over $200,000/person
 Institutions must be above the point of
diminishing returns
 Where is the “tipping point” within
community settings?
 When we consider homes size 1 to 10?
 What is the ‘best size’? (On the average)
Scientific Literature: Sociology
(Slater’s classic – ideal size 5 –
never too big, never too small)
Scientific Literature: Organizational
& Industrial Psychology
 (Little known scientific questioning of
entire “Economy of Scale” assumption)
 (Misapplication of industrial production
models to human service systems)
Tug of War & Individual Effort
 Kohler, back in 1927
 Measured Tug of War




games by # of players
Up to size 12
Extra person did NOT add
full strength
Each new person pulled
10% less energetically
“Free Ride” phenomenon
in groups
Cost: Economy of Scale Idea
 In economics, EFFICIENCY (production of quality,
salable products) increases with size (modern doubts)
 Human services quality product = better quality of life
 When size gets above 6, quality drops
 So we try to fix it by adding staff
 Then the larger settings get more costly
 But the outcomes do not improve
 Because the extra staff interact more with EACH
OTHER and NOT with the people in the home
CT 1990: Per Diem Cost By Size
350
300
Average Cost
250
200
150
100
50
0
2
3
4
5
Size of Home
6
7
8
PA 1992: Per Diem Cost x Size
$286
$300
$250
Per Diem Cost
$207
$200
$167
$150
$153
$138
$145
1
2
3
$140
$143
$144
4
5
6
$100
$50
$0
Size of Home
7
8
9
Did People with More Severe Disabilities
Really Cost Much More in the Community?
Total Costs by Level of Retardation
200
191
182
180
168
161
160
Per Diem Costs
140
120
100
80
60
40
20
0
Profound
Severe
Moderate
Mild
What Size Is Best?
 We do have a lot of evidence
 Size studies published by Conroy 2011
 A few examples
Progress in Independent Functioning by Size of
Home: 2200 People in Oklahoma, US
1990-1996 (100 point scale)
8
7
6.7
Points of Gain in Independence
6.3
5.8
6
5
4.5
4
3
1.7
2
1
-0.4
0
-1
1
2
3
4-5
Number of People in the Home
6
-0.4
7-10
Loneliness – Negative Reponses
National Core Indicators 2008, N=1580
% of sample
% Lonely
Sometimes or Often
60
55
50
45
40
1
2
3 to 6
Residence Size
7+
Like Home? Negative Responses
National Core Indicators, 2008, N=1661
% of sample
% Like Home?
No or In-Between
20
15
10
5
0
1
2
3 to 6
7+
Residence Size
Choice & Self-Determination
National Core Indicators 2006
Personal Choice Scale Scores (A SD Measure)
National Core Indicators, 2006, N=2,087
1.80
1.62
Average Choice Scale Score
1.60
1.31
1.40
1.20
1.20
0.99
1.00
0.80
0.60
0.40
0.20
0.00
1
2 to 3
4 to 6
S ize of Home
7 plus
Human Economy of Scale









Younger = More need for individual attention
Severe disabilities = More need for individual attention
Smaller home = More individual attention
More individual attention = better development
Small 
More Individual Attention 
Better Outcomes
Break point: around 6 – above 6 we get bad outcomes
Best outcomes 1 to 4
 Book to read
– Small is Beautiful: Economics As If People Mattered
Good or Bad Social Policy?
Probably the most successful
American “social
experiment” of the Boomer
generation
“You can always count on
Americans to do the right
thing - after they've tried
everything else.”
Winston Churchill
Virginia’s Time for Change is NOW
Year Center
2014
Southside Virginia Training Center (SVTC) Closes
2015
Northern Virginia Training Center (NVTC) Closes
Size 2009
2016
254
172
0
2017
0
2018
Southwestern Virginia Training Center (SWVTC)
Closes
2019
2020
156
0
Central Virginia Training Center (CVTC) Closes
490
1072
Virginia Will Really Need Evidence:
A Cost/OutcomeTracking Project
 An independent scientific assessment
 “Are people better off” after leaving?
 Independent
 Annual
 Every person, every year, face to face
 Qualities of life, services & supports, costs, family
surveys
 Every year, with scientific confidence, we can tell
all stakeholders – Are people better off, in what
way(s), at what cost?
Thank You – And Good Luck!
Q&A
Center for Outcome Analysis
Havertown, PA
www.eoutcome.org
[email protected]
610.668.9001